Long Covid brain fog may be due to damaged blood vessels in the brain
sciencenews.org
sciencenews.org
I called my doctor's office to schedule an appointment and when the receptionist asked what the appointment was for, I simply said "brain fog". I had no other way to describe it.
It was intense and disturbing. I often couldn't put cohererent thoughts together, I was constantly forgetting what I was doing, forgetting where I had just put something.
Over the coming weeks it slowly receded, but there's no doubt it is real.
I've had people dismiss it as "it's all in your mind". They're right on some level ... it was in my mind. But it was very real, and I have no doubt it was SARS-CoV-2 related due to the timing and sheer intensity of it.
It's a dysregulation of the ANS/sympathetic nervous system which is likely caused by auto antibodies - so it's very much physiological and outside the expertise of a psychiatrist.
So, any good doctor will try to heal your symptoms regardless of the cause. The only difference when they think it’s psychosomatic is that they’ll also try to treat your stress.
The symptoms exist, they are originating due to thoughts/beliefs in the mind.
Unfortunately, when there isn't an obvious matching hole they tend to stuff them in wrong holes (there are conditions for which getting the right diagnosis often takes years), or when they don't see any appropriate hole they stuff them in the "crazy" hole. And the doctors are very reluctant to take a pigeon out of a wrong hole, especially if it's the crazy hole.
I recall a thread on here from some years back, diagnosis: anorexia. Real diagnosis: partial gastroparesis. She didn't want to eat because her body wasn't pushing the food on down the system properly and eating was very unpleasant!
did you mean to say psychologist? In the US at least, psychiatry is a medical practice area. Writing Rx scrips requires pharmacological training, so you need to hold an MD amd pass medical boards etc. Not sure if DO route is even an option.
Psychology otoh can be practixed with a Psy.D (clinical focus) or Ph.D (research focus) no MD, residency involved.
I got sick in October 2020 before vaccines were available. After the initial 10 days which I would describe as moderate, borderline severe (6/10, where 7/10 is hospital and 9/10 is ICU) I had all manner of absolutely weird things happen to my body. I won’t go into the details about the actual illness since the symptoms are well documented but suffice to say I had breathing issues and there was a lot of monitoring with the pulse oximeter
First, heart pain. Stabbing in the chest. I got on colchicine and saw a cardiologist. That lasted probably 2-3 months before it finally went away. I had ekg and echocardiogram, both came up clean.
Second, Reynauds. I live in Texas and it gets a little cold but not Nordic cold. For the first time in my life I had Reynauds symptoms during the winter and I lost feeling in my toes entirely unless they were submerged in hot water for multiple minutes. This happened many times that winter.
Next, weird food allergies. Eating anything with gluten caused me to, I kid you not, have me in bed gasping for air for hours at a time. I ate a pizza in this time period and instantly regretted it and that continued for hours.
More extremely strange circulatory issues: I wore a pair of running shoes for years and years before I got sick. I wore that same pair of shoes and it created lines and pain around my feet such that I went to the ER thinking it was a blood clot. No, it’s just that my tight shoes literally just bruised my feet for no explainable reason when they had never done that before.
POTS. Standing up made my heart rate spike for no reason. This is a measurable phenomena for people who have autoimmune disorders called the tilt table test. Had this for months
Everything luckily for me mostly went away within around 6 months. I had a lingering chest pain in breath that is now mostly gone that I genuinely thought I would deal with for the rest of my life. I think it’s basically gone now after almost 4 years.
I’m a scientific dude. My conclusion after all this is that it’s autoimmune and that no one actually understands the mechanism which is why people who complain about this get dismissed. It’s easier for a doctor to say “it’s all in your head” than to admit that the current body of knowledge of medicine simply does not understand what is happening to people’s bodies. I wish and hope that so many people suffering from this stuff like I did changes that perspective a bit.
She too had the POTS and range of aches and issues. While she's largely recovered now, she still has to pace herself.
Really hoping this is better understood in the future, and that we are better able to treat people with it.
I find myself more fortunate than most in that I never really had the fatigue and brain fog issues that plagued and possibly still plague many others. I could definitely see those things being quite detrimental to my mental health in the long term if I had them.
She's so much better now, and getting rid of POTS symptoms was a massive turning point for her, esp as we kept being told that no one recovers from POTS.
And yes, a friend of mine (male model in his 30s) who also had LC, could cycle for hours (no physical fatigue), but mental tasks totally wiped him out.
I experienced something similar to OP. Took me around 12-18 months before I felt like the symptoms were abating.
I wouldn’t even classify the actual covid episode I had as severe (and indeed, as far as I could tell from reading reports there doesn’t seem to be strong correlation between severity of illness and whether someone gets long covid or for how long). It was not bad enough to go to the hospital (though I did consider doing so a couple of times).
I don’t really get allergies or otherwise and consider myself to have a pretty normal immune system. I get sick at about the same rate as what you would expect a normal person to get sick. My health simply took a v shaped nosedive on a graph for 6 months after I got covid.
Completely healthy now, but passed over after every first interview no matter what I do or do not share about what lead me to leave the previous role. If you had to leave work, do you have any suggestions as to how I may come accross as employable again?
Another option would be to pick up freelance work. This can often lead to fulltime employment, particularly when a company hires you for a short gig and you impress them.
Exertion is the biggest trigger for me, but also the prescribed cure (Gradual Exercise Therapy). Alcohol is a weird one, I often feel better with a hangover than I do on a bad fatigue day (immuno-suppressant?) but then way worse the days after. I also have recurring Mononucleosis symptoms and have tried anti-virals to no avail...
It's so obviously immuno-related, really hope the science progresses soon.
Some interesting articles: https://www.gavi.org/vaccineswork/what-happens-when-you-dont... https://edition.cnn.com/2021/03/12/health/ron-davis-covid-lo...
really sorry you're dealing w mecfs insaider, i feel your pain
Sicknesses caused by viruses are known to cause lingering "fatigue syndrome" in rare cases, so I'd be surprised if doctors would just flatly dismiss it. There probably is no such specific thing as "long covid", its just this syndrome that was always a thing.
Some things to do: get biome tests regularly, go on an elimination diet, find the right supplements, join various LC/mecfs communities doing this work.
The short answer is the medical system really doesn't know what to do here and if you're dealing w this stuff you have to take it into your own hands and familiarize yourself with the areas the medical system doesn't focus on.
Same! I was diagnosed with syncope on standing. Every time I stood up from a reclining position, my heart would pound and the world would start fading to black. I too was referred to a cardiologist and had the tests performed. And it also cleared up for me but it took a long time (months).
That wasn't my only symptom. I am completely scientific also. I know about how SARS-CoV-2 binds to ACE-2 receptors, I know about how it lodges itself in multiple organs ... and the symptoms were real.
This was another one where I didn't even think "Covid" when I went to the doctor, but this all coincided with a recent Covid infection.
https://www.theguardian.com/society/2024/mar/15/long-covid-s...
COVID was the devil virus and people were attributing many things to it. And since there is no diagnostic test for "long COVID", we are sorta just guessing everywhere here.
It need to be more specific to be useful.
> It is because of these specific factors as well as inherent limitations of the study methodology itself, that their conclusion that it is “time to stop using terms like ‘long COVID’” is overstated and potentially unhelpful. Long COVID has been a global phenomenon, recognised by WHO.
> Unfortunately, this question cannot be simply answered in this work. The study is observational, based on reported symptoms with no physiological or detailed functional follow-up data. Without laboratory pathophysiological assessment of individual patients, it is impossible to say that this is indistinguishable from flu-related or any other post-viral syndrome.
Of course, every 'puchy-headline' paper deserves to be considered on its own merits, but perhaps read the paper not an article about the paper if you want to take it as 'The Truth'.
"Long covid is not a thing" plays into the "Covid is not a thing" conspiracy theory; it's probably a harmful trope, rather than meaningfully helpful for the people suffering symptoms.
There is universal agreement the symptoms are real.
It's unclear what benefit using a different name for it offers.
That something plays into a harmful trope doesn’t speak to its veracity though, and diminishing smaller inconvenient truths so as to not lead people astray in my opinion exacerbates rather than diminishes conspiracy theories.
Could probably have prevented a lot of wasted time, money, and endless internet arguments by saying something early on like “ivermectin, which humans are regularly prescribed, does look promising for treating Covid, but only at dosages that are very toxic to humans, or in populations that might have parasites, as a result of curing those parasites”, instead of the “lol it’s only for horses!” stuff, or by clearly stating “lab leak is possible, and not the same thing as an intentionally man-made bioweapon unleashed by Chinese people”.
This wasn't a good study, scientifically. Scrutiny was not applied before reporting on it, and now we have a harm on our hands. The fact that we're discussing it attests to that, since its a sideshow leeching attention away from the main topic of long covid's effects.
Agree that public messaging could have and should be a lot better on the topics you mentioned, but disagree that harm should not be at least a part of the calculus.
There were plenty of places which published long, complex, nuanced data and explanations about ivermectin.
But lots of people are unable to understand complex writing or statistics. And most people have little understanding of biology, medicine or disease. This led to widespread misinformation, which in turn led people to try to simplify out all the complexity, and trim it down to basic things like "ivermectin doesn't work" and "don't take horse medicine when your doctor refuses to prescribe ivermectin to you".
The messaging you think would have "prevented a lot of wasted time" was exactly the messaging in the medical reports that started the whole problem. Dumbing it down was a response to the "internet arguments".
Dumbing a message down to contain no nuance — in my opinion — opens up the floor for quacks who will be exploit the lack of nuance on their podcasts.
Personally I had Long Epstein-Barr for almost a year. So I know it's no joke.
Most virus infections can cause long term problems.
This is very, very false. Your body is currently fighting off a very large number of virus and bacterial infections. Most are innocuous, and don't even raise the symptoms of a cold.
Now, going out on more of a limb and moving into speculation:
There is a tiny minority of diseases -- most very new and poorly-understood -- which do this.
There's some evidence that prior to around 10,000 BC -- the rise of civilization -- very few diseases like this existed. What appears to have changed was that with civilization -- and now with population density and travel -- diseases can co-evolve with humans, and integrate into our various chemical signalling pathways. Things like Covid or AIDS can explicitly target our immune system, for example, to try to avoid being caught.
* Prior to civilization, a successful disease had to work across a broad range of species.
* When the population was a fraction of what it is today, there was less opportunity for disease to evolve.
* Without travel, there was less opportunity for spread (and for crosstalk between viruses)
... and so on.
These relatively new diseases can cause long-term problems. There's a lot of them, and it's not always the same ones as cause acute symptoms!
As our population grew and contact grew there were enough people around that a disease could sweep through a population then go elsewhere while a new generation grew up to be vulnerable when it finally came back.
Even with that, though, most of our disease are minor variants on stuff from the animal world. Covid appears to be simply the latest iteration of something that has periodically spilled into the human population in the past--except with the extremely nasty trait of asymptomatic spread. HIV is simply a minor variant on the already-existing SIV. It learned to target the immune system long before it targeted humans.
You need a name for things. And long flu might have different etiology than long covid despite similar symptoms, so it doesn't make sense to lump them together as "long virus".
I think there's precedent for such a decision in how concussions are generally viewed. An individual can be diagnosed with a concussion, which has common, acute symptoms. If the acute symptoms last longer than is typical for a concussion of a given severity, the individual could be diagnosed with persistent post-concussive symptoms (a.k.a. post-concussion syndrome). Of course brain injuries are different than viral infections, and we still have a ton to learn about brain injuries, but it's the idea of clearly differentiating between the acute effects and the chronic, persistent long-term effects.
To be clear, I'm not trying to relate COVID with concussions beyond the medical nomenclature, but I think the nomenclature is effective in making the distinction to which I'm referring. It's not perfect, but we'll never have perfection in research.
Edit: It's unclear if the paragraph breaks are displaying properly, so I apologize if it appears as a wall of text.
Isn't that akin to "long covid"? No one mistakes post-concussion syndrome for a concussion, and no one mistakes long covid for an acute infection.
We do have a formal name for long covid: PASC (Post-Acute-Sequaelae of Covid)
It won't catch on a regular name because it's unpronounceable, but it there for the scientific literature and those who wish to speak formally.
I'm open to there being a better way, but ultimately you need something people can refer to, as it is a common phenomenon.
And of course, if you had not relied on a politically motivated, faulty, non-peer reviewed study you would find the following problems caused by Long Covid:
viral persistence https://www.nature.com/articles/s41590-023-01601-2
Microclots in the blood and endothelial dysfunction (leading to vascular problems, organ failure, cardiac events) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8883497/
Immune system dysregulation https://www.science.org/doi/10.1126/science.adg7942
Mitochondrial damage https://www.news-medical.net/news/20240104/Study-identifies-...
And finally yes, blood-brain barrier disruption https://www.nature.com/articles/s41593-024-01576-9
and then stop spreading harmful propaganda. That's what you are doing, not "reporting a study", faugh!
Now after experiencing the pandemic... I suspect a small part of the reason for things like this maybe is they younger you are, the less chance you've had the misfortune to experience some infection or another that left you with some mild mental impairment -- including perhaps impairments so small that no individual would notice it in themselves, but in the statistical aggregate, it has an impact.
As far as knowledge and wisdom go, older is better. But raw intelligence or processing power, or most of all, the one that really seems to impact everything -- working set size! -- maybe every year is only ever one more chance to get worse, and never to get better?
Here’s a free digital copy if anyone wants to read it: https://jondouglas.dev/longhaul
On a more positive note, they recently found that there is some sort of frequency that may enhance / trigger the natural junk clearance mechanisms that go on during sleep.
I believe you are referencing [0], where scientists discovered that in mouse models the naturally occurring brainwaves generated during sleep help clean up extra cellular 'junk' in the brain via the glymphatic system.
It has been known since 2012 that the glymphatic system (which was discovered around that time) was a mechanism for cleaning the brain. And even back then there was speculation around if Alzheimer patients had some kind of damage to this system which caused the build up of amyloid proteins.
I have yet to see any research conducted on figuring that out (but it may exist).
[0] https://jamanetwork.com/journals/jama/fullarticle/2816616
If this were not the case why do we see rising odds for Long Covid with repeated infections? If there's no lasting damage and it's facing a more tuned-in immune system the expected result would be a lower incidence.
And we see athletes with higher rates of Long Covid than the population at large. Or do we? That could also be explained by athletes being more aware of where their limits are and are used to pushing themselves to those limits--hence they are more aware of impairment.
But sometimes, things come to my mind without talking at all, and it is usually more profound things, or things that trigger a more profound emotion. Regarding self-knowledge or when doing introspection, I confess that having a inner monologue is not effective at all, at least to me.
Can I ask how you "work" mentally? For instance, supposing you're a software developer, how do you go thorough learning a new thing about a programming language? I usually talk to myself things like "suppose I do this here, and..". It is like I am pair-programming with the other half of my brain.
Hope you don't mind me asking! Is just curiosity (and the fact that the inner monologue sometimes may do more harm than good)..
> "suppose I do this here, and.."
Sure, I will follow the same pattern, but the drive to fiddle with something bubbles up from some abstract place. Words don't even come into play.
Do you also subvocalize when reading text?
This topic is a fickle beast. The only baseline I have is my own cognition -- I can't say "yeah it's like what you're doing only..." -- I am fundamentally unable to experience your way of thinking. We are blobs of fat oxymoronically trying to explain our subjective experience in an objective way through our 2nd languages (lossy doesn't even beign to describe it). It's absurd but oh so fascinating.
I don't understand. Thought experiment:
You go to a wall and there is a picture hanging on the wall. You like the picture. Can you "say" in your head without using your voice/mouth "I like this picture"?
If you have to use your voice, can you mimic the tongue movement without moving your mouth and "hear" the words without making a sound?
I normally don't talk very much, maybe that's why? Maybe my though process is further removed from language than that of most other people?
If I appreciate a piece of art then it goes into my memory palace collection in a room that groups it together with other similar pieces of art that I had a similar appreciation for. As I appreciate the piece of art my memory palace branches out from there in many directions. I'm recalling other similar pieces of art (how does this art rank compared to other pieces I've appreciated). I'm recalling other pieces of art by the same artist (how did this art compare to their other works). I'm recalling similar artists of the time period (how did this work compare to art by contemporary artists). I'm imagining the techniques that were used to make the art, whether dramatic and physical (splashes of paint in a modern art piece) or precise and delicate (such as the fine brush strokes). This is the process of appreciation I feel.
Basically, the "I like this picture" is a very visual experience for me, not a vocal experience at all. If I did not like the picture then I just look at it, have an internal feeling of "meh" or "boredom" and do not put any effort into memorization or related recall and connectivity of the memory.
Yes, mentally say out loud is what I'm talking about. And sometimes it's a conscious effort as well, definitely. But it doesn't require much effort from my part. Well, it requires so little effort, that sometimes I catch my mind talking to itself, without the other part really listening. So, sometimes it is not a conscious effort. My reasoning is that maybe some of the thoughts seem to trigger some part of the brain that is used for vocabulary, and they express themselves "vocally" (but without any sound)..
> Do you also subvocalize when reading text?
When reading text, and now by replying to you. English is not my native language, so I must "vocalize" the words internally, and then write them as they "sound" in my brain. I've been doing this for such a long time that is feels quite natural to me. And when I'm less rusty (specially when talking), I tend to skip the "inner" voice and project directly to the "outer" voice. But it only happens when I'm having lots of conversations in English. I haven't been writing or talking in EN too much lately, so I have to use my inner voice as intermediate step. As for reading, most of the time I read using my "inner" voice, both for English as for Portuguese (which is my native language).
For other things that are less abstract, with a concrete real world appearance, I'm constantly visualizing the outcome like I'm looking at a picture or watching a movie. This also applies to the "things that come to my mind without talking", which you mention. They drift into appearance in my mind as images as well.
https://whn.global/scientific/spectrum-of-covid-19-from-asym...
There can be mitochondrial damage in some LC patients which will stop them being able to release energy the way they used to. https://www.news-medical.net/news/20240104/Study-identifies-...
And that has been my experience.
Yoga nidra (sleep meditation) has been quite helpful.
What really helped is also performing nervous system calming techniques not only at rest, but slowly when I walk around as well when I was able. Got the idea from Becca Kennedy who just posted this video: https://www.youtube.com/watch?v=XfZFtWx1YvM
The downside is that a lot of people are out to take your money when you read about this. I'm skeptical of brain retaining courses. I trust Deb Dana's books
One technique I'll add to the list: skin massage (literally pinching it with your fingers) around the sympathicus area: along the lower ribs, up the sternum and into a V-shape around the neck (roughly following the collarbones). The nerve endings on the skin literally stimulate the sympathetic system, allowing it to "reset". I don't know the exact mechanism, but I can vouch for it actually working.
NB: I have nothing against evidence-based medicine. But our bodies are much weirder than the high modernists were willing to admit.
Pushing heavy weights is very taxing on the nervous system and kicks it into gear to start the process of growth.
"Vinpocetine, a derivative of the alkaloid vincamine, has been clinically used in many countries for treatment of cerebrovascular disorders such as stroke and dementia for more than 30 years. Currently, vinpocetine is also available in the market as a dietary supplement to enhance cognition and memory..."
The pandemic was a unique situation because the entire world population was immuno-naive to covid. This is no longer the case; we all get exposed dozens of times per year and keep our natural immunity up.
It’s cost/benefit and leaders took the ‘keep the graph going up and to the right next quarter’ approach to the long term risks.
Containment is of course possible, it would just take technology improvements for diagnostic tests and education and investment in air quality.
The calculation is that saving the years of ill health aren’t worth disrupting the status quo
Edit: What’s the difference between sweeping over and always present? Whether we test and report it in the news or not?
And the "chart goes" up is such a strawman, I'm sure there's no real life downside or long term risk to just shut down everything for (2) more weeks... but whatever. That's such a western mentality, that only comes with the privilege of not living in an economically ruined part of the world.
There's a reason why doomers and "zero COVID" proponents are usually in the vast majority white, privileged, urban residents. I'm sure some vague, very broad "long term risks" that we still haven't seen concretely outside of a tiny minority (even if hundreds of millions were infected) are more important than the actual, proven, repeated risks of "charts going down".
In a way there's an odd parallel with antivaxxers who love to claim that in just a little bit more we will see the long term risks that came with the vaccine lol
Furthermore, Covid has animal hosts. Even if the would could cooperate on completely stamping it out it would soon jump back from some animal. We simply have to live with it, take what precautions you want in your personal life but there's no point in society at large doing so.
(I do, however, think that medical facilities should be mask-required. But I think they should have been pre-pandemic, also.)
In my opinion, there's no significant levers left to push to affect infection rates much.
Of course, we should be doing everything reasonable we can to tamp down COVID (and the flu). But short of permanent quarantine or forcing anti-vaxxers to get vaccinated, I'm not sure what there's left to do.
(It would be nice if we could socially normalize and encourage wearing a mask when one feels slightly sick, too).
I started taking a brain-support supplement and it has made a dramatic improvement. Kind of like my senses, reflexes, energy have all been enhanced basically back to what they were before I got infected with this crap.
Edit - I'll just say what I'm taking. It's called "Sharpmind - Brain Formula" by Solaray. I don't have any hard evidence, but I started feeling pretty close to the "before times" after a few days of taking it. ymmv
If we wanted billions spent on public health we can't leave it to politicians and business leaders
One of the issues now